7 week update

So...

You know how I told you about my amazing friend who I'm blessed to know, and how circumstances miraculously aligned that I needed a neurologist and she just so happened to work for an amazing one?

A few days ago, I received news that she's been laid off from that office.

I'm heartbroken on her behalf. I can't believe she lost her job.

My first thought was that something had happened as a result of the favors she pulled for me, but no, it was just standard budget cuts that knocked out half of her office. This economy? Stinks. I can't find words that I can actually use on this blog to share how devastated I feel right now. ,

I can't even talk about myself or my progress right now; it feels selfish and superficial. I'm not the only person whose life is being torn apart right now. While the pieces of my life are starting to put themselves back together, someone else's life is coming apart.

Six Weeks

Wow, okay, yeah, I missed two weeks.

OOPS.

Sorry, y'all.

Okay, here's the quick rundown of what's been happening:

1) I am super, super blessed that one of my oldest friends works at a brain research center. She spoke to her doctors there about what's been going on with me, and they agreed to look at my case. Just for consultation purposes, as a favor to her. ANYWAY, I was able to talk to Dr. J, a very nice doctor who is highly respected in neurology. First, he was SHOCKED at the level of tests that my neurologist, Dr. R, hadn't run. He asked me why she hadn't done XYZ, and I'm going, "Um, I don't know...I didn't know she was supposed to!"

The second thing he told me actually made me equal parts pissed off and hopeful. Going back 6 weeks, when I was first admitted to the ER, (when they misdiagnosed me with a migraine), the doctor there commented offhandedly that I had a bit of a sinus infection on the CAT scan. Nothing further was said, nothing was prescribed for it, and I was sent home. W I was admitted to the hospital 3 days later, no one said ANYTHING about the sinus infection. I wasn't really feeling sick, just a bit sniffly, and with everything else going on, it seemed rather silly to bring it up.

Hey, did you guys know that a sinus infection can actually get so bad that your brain is effected? Me neither. But it makes sense. All of the swelling can start to press on nerves, including optic nerves, which can cause double and blurry vision, dizziness and head pain. Sound familiar? Yep; there is a good chance that this sinus infection, which the docs and hospital had left untreated for a month and a half, could have 1) started the ADEM in the process (remember how it can be the result of a bacterial infection?) and 2) been keeping me from progressing in healing.

I got a crazy-strong round of antibiotics, ($200 for 7 pills, boy am I glad I have insurance!) and just finished them today. Funny thing, I didn't realize how much sinus pressure I had in my head until it was gone. I still have double vision and I'm still dizzy (I took a splendid fall yesterday and barely missed destroying my laptop), so it wasn't a total cure or anything, but I've noticed an improvement. Maybe I'll continue to feel better over the next few days?

2) Oh my gosh, you guuuuuys! Today was my first full day off of my walker!! I even went to physical therapy this morning without it. I'm wobbly, and I'm definitely not moving quickly (no marathons for me, haha!), but I'm completely unassisted for the first time in a month and a half. You have NO idea how good it feels! And yes, I know, I'm probably going to have a bad day tomorrow, and pay for all of this progress with an excruciating headache tomorrow, but for right now, I'm just enjoying feeling somewhat human, you know?

3) Speaking of therapy, basically what I'm doing is re-teaching my body how to walk. Yup.It's as fun as it sounds. The equilibrium in my body is off, so I'm having a hard time transferring my weight from one side to another, which is exactly what walking is. So I do a lot of work on parallel bars, taking one step forward and shifting the weight back and forth and trying to compensate for the fact that my body wants to keep falling to the right. And we do a lot of balance exercises. Something as simple as crossing one leg in front of the other can throw me off balance enough that I'd be falling if I didn't have a balance bar to grab me. Therapy is REALLY frustrating, and really challenging. But, I guess it's helping, since I'm able to get around on my own somewhat now.

Alright, so that wasn't exactly short and sweet, but hey, you love me anyway, right?

Four Week Update

So, um, four weeks, huh?

Damn.

You'd think it'Id feel like a long time, since all I've really been doing is sitting around the house, but no. I can't believe it's been just under a month.

First, I'm going to bitch for a sec, 'cause I got to get this off my chest. Being out of work when you live paycheck-to-paycheck really effing sucks. I have NO income coming in. Zip. Zero. Zilch. Nada. I've been approved for short term disability, which is supposed to provide a percentage of my income, but they've been dragging their damn heels in cutting me a check. I found out today that they mailed it on the 4th. It's still not here, probably won't get here until next week. And the bills are fricking due. The angry 'your bill is LATE you evil person you!" people are calling already.

I'm frustrated. I'm upset. I'm stressing. I'm angry. I CAN'T go back to work. Believe me, I would if I could. I can't pay these people because I don't HAVE the money. They can threaten me with collections all they want, and I can show them my empty bank account. But they still won't stop calling me. I'm stuck, broke, until that disability check comes in, or until I can go back to work. Which, considering I'm only able to type this by closing one eye so I can see a single computer screen is probably not happening soon.

This isn't a plea for money, or for help, so please don't think I'm asking for a handout. This is just the reality of the situation when you have a serious injury in America and companies can drag their heels as long as they want to keep from paying out what they should.

Also, the first person to bitch about disability payments being for freeloaders, lazy asses, or people working the system will get unloaded on. Because I'm in THAT kind of a mood.

Uh, yeah. Back to regularly scheduled update blog and all...

I started rehabilitation yesterday. Vestibular Therapy to be exact. It's mainly brain therapy, teaching my brain and body how to orient itself in space again so that I'm not dizzy and I have some sense of balance. Which would be nice, because I'm really, REALLY tired of stumbling, wobbling, and flat-out falling all over the place. The therapist seems nice, and I'll be going twice a week, plus I have a packet of exercises I'm going to be doing at home.

Vision-wise, I'm having good days and bad days. It's crazy. Some days, I wake up and it's great, I can even see pretty decently for awhile before it slips. Other days, nothing works right, I can't focus, and the double images keep sliding around in front of my eyes.

Balance-wise, again, I have good days and bad days. I guess it's all a part of the healing process, right? Two steps forward, one step back? (Or, in my case, stumbles forward, shuffles back?)

I want to get back to my life so badly it's not even funny. August is gone, and I missed the last gasp of summer. I missed the huge Labor Day, Last Camping of the Season trip. I'm missing The Fair. I'm missing The Mystery Wine Walk. September is in full swing, and I can't partake. I miss being able to walk to a friend's place up the street and gossiping over wine, or going to the dog park with my friends.

Most people know that I'm a geeky chick, and I play rpgs and games both on consoles and online. I miss the gaming a bit, but I really miss the comraderie and the family of my gamer crew. I'm blessed to play with people I've known/played with for YEARS, and we really are like family. I miss being able to jump into a game at the end of a long day and catching up.

Gods, I even miss going to work.

Yeah, someone remind me I said that a few months from now when we're in the holiday rush, okay?

Welcome to September

Wow, where the heck did the summer go? My social media feeds are flooded with back-to-school pics, and several of my young friends are starting college this fall...COLLEGE. (How old do I feel right now) The Halloween candy is out in stores, Panera Bread is serving Pumpkin Spice lattes...It seems like autumn is just around the corner.

Sunday, I had an awesome day. I went to a park with S, L, E,and J, and we had what L is calling "Art-in-the-Park" day. I was feeling pretty good, I had a lot of energy, and the dizziness wasn't too horrific, and I was really excited to see my friends and get out of the house. We painted on canvas and chatted. It wasn't about the art, it was about the conversation, and I was so glad that we could all meet up. And we joked that my art was going to be the best because I have not one eye, but TWO eyes on my work! (Double vision and all) One eye is the artist and the other is the critic, haha!

My painting, Falling Leaves

But I think I'm paying for overdoing it. Monday and Tuesday, I was horrifically dizzy and drained. Today, my head has been splitting all day, growing increasingly worse as the day goes on. I finally had to break down and take the pain pills Dr. R prescribed. I don't care if it's going to set my treatment back, I can't take this anymore. The pain starts at the base of my head, right before my neck starts, and arches up the right side of my head to my temple. It's excruciating.

I know Dr. R said that there would be good days and bad days, and today is a very, very bad day. But there's a part of me that is starting to panic, wondering if this headache is the start of another demyelinating event, and I wonder how long I should let it go before I hit the panic button.

Tomorrow, I start vestibular therapy (that's my brain therapy, fyi), so hopefully the therapist will be able to give me a better idea of my treatment timeline, and give me some tricks and tips I can use at home to help speed my recovery time.

P/S, I updated the comment settings - some reported it wasn't letting you leave comments on posts....oops! Don't know how it happened, but it's fixed now.

Week 3 Update

Hello, hello!

It's been a pretty eventful week, I suppose. All things considered, of course.

So, everyone's been asking me on Twitter and Facebook about my neurologist's appointment. The truth is, I've been so disheartened by the news that I've been sort of Meh about talking about it much. I'll be honest, I walked into the appointment hoping against hope that she'd have a diagnosis and a magic pill/potion that would fix me.

I'm guessing you've figured out by now that it didn't happen.

First things first, the spinal tap came back as inconclusive. Meaning, it can't confirm or rule out Multiple Sclerosis as a diagnosis. Evidently there are certain bands of proteins that they were looking for. If they show up in the spinal fluid and NOT in the blood, it's pretty indicative of MS. Well, lucky girl me, the proteins show up in both my spinal fluid AND my blood. Which means the diagnosis can go either way. I could have MS, or I could not. The only way to know for sure is to wait and see if I get additional occurrences. GREEEEAAAT, that was exactly what I wanted to hear, doc, thanks.

The current diagnosis is ADEM - Acute Disseminated Encephalomyelitis. I'm going to borrow from myelitis.org to explain what that is.

Acute disseminated encephalomyelitis (ADEM) is a neurological disorder characterized by inflammation of the brain and spinal cord caused by damage to the myelin sheath. The myelin sheath is the fatty covering, which acts as an insulator, on nerve fibers in the brain. ADEM may occur in association with a viral or bacterial infection, as a complication of inoculation or vaccination, or without a preceding cause. Onset of the disorder is sudden. Symptoms, which vary among individuals, may include headache, delirium, lethargy, coma, seizures, stiff neck, fever, ataxia, optic neuritis, transverse myelitis, vomiting, and weight loss. Other symptoms may include monoparesis (paralysis of a single limb) or hemiplegia (paralysis on one side of the body). The disorder occurs in children more often than in adults.

Thanks to the inconclusive spinal tap, we still don't know WHY this happened to me. And we still don't know if it's going to happen again. I'll have an MRI ever so often to watch for additional demyelination.

My vision is improving, which is awesome. I still have the double vision, but I'm getting moments of stillness more often. My balance is improving, too. I only use the walker/wheelchair when I know I'm going to be covering big distances, but other than that I've been wobbling around the house on my own two feet. I still have no temperature sense on my left hand side, though. I was holding a mug of tea tonight, and one hand was nice and toasty, and the other could have been holding a cup of lukewarm water for all I could tell.

Oh! And random oddness? Got a mosquito bite on my left leg. Could feel the itch. Couldn't feel the scratch. Yeah...that sucked exactly as much as you think it did.

Dr. R and I also talked about recovery timelines. She says that most patients reach 80% of their baseline within 6 months, and have up to 2 years to gain that additional 20%. A medical journal I found states that full recovery is seen in 50%-75% of cases. Those are pretty good odds, I think. And I'm going to work my ass off to be in that range.

There are a couple things I can do to improve my odds. The first is starting therapy. As soon as I get the authorization from my insurance company, I'm going to start physical therapy and vestibular therapy. Hopefully the combination of the two will get me strong enough to return to my regularly-scheduled life asap. Secondly, I have to be careful about what I eat. Because of the disease, my immune system can choose to spontaneously overreact to anything foreign - ie, extra vitamins/supplements, preservatives, processed foods, etc. I'm supposed to stick to healthy, whole, as natural as possible foods. Which, I think we can all agree, is a good healthy decision anyway, so I'm not fussing about making the change.

Despite the fact the Dr. R says it's not environmentally based, I'm sort of on freakout-mode about the chemicals in my everyday life. Especially shampoos and things that go on my head. I mean, that's a fraction of an inch away from my brain! So, even though there's no indications per the doctor, I'm switching everything that goes on my head. And I've discovered exactly how challenging it is to find headcare products that aren't loaded with scary-sounding chemicals that I can't pronounce. I'm compromising by using natural babycare products. They smell good, and I figure if they're safe for newborns, I'm probably pretty clear of anything that may be hazardous. Luckily, my hair is so short because of St. Baldrick's, so I don't need styling products or anything.

Now would be the appropriate time to share how very, very thankful I am for my insurance plan! I met my deductible and co-insurance on my first trip to the ER, and though I can see my medical bills piling up in my insurance records, I'm not being charged for it. I can't even imagine if I didn't have insurance right now, oh my gosh.

I'm also EXTREMELY grateful to the amazing people in my life. I've received many kind cards, texts, and notes of encouragement and support, lovely drawings from my friend's children, and offers of help everywhere I look. I'm a lucky woman, and I know it. I couldn't do this without the love and support I'm getting. And if you happen to see the stunning creature I call my roommate, give her a hug, would you? Because she's picking up all the slack around the house, and taking care of me, and I just think she's wonderful.

Wow, this got really long really quickly. Sorry guys. If you're still reading, thanks!

Two Week Update

Two weeks. I really can't believe it's been two weeks since I... shoot, I don't know what to call it. Got sick? It doesn't really seem appropriate; this isn't like a cold or flu. The neurologist says that I have a brain injury, technically, but I can't even say that because it's not as though I got hit on the head, y'know? It's been two weeks since my brain hit the self-destruct button, how'thats that?

I had a doctor's appointment on Thursday where I met the woman who is going to be my new GP. The hospital about flipped when they found out that I didn't have a regular doctor, (that's what the same-day clinic is for!) so I had to get on the ball and get one asap. Dr. C seems nice enough. You know, though, it's almost amusing to have an illness(?) so serious that it blows the mind of the staff. The nurse who did my preliminary was shocked, and even the doctor was extremely concerned and amazed at the extent of my symptoms.

I'm getting pretty frustrated with my vision. I've noticed that I'm worse in the mornings; I wake up really dizzy, and the room spins. Even closing one eye leaves the other eye moving without my control. It tends to improve as the day goes on, and I can at least have a few minutes of stillness later on. And there's a spot in my vision about a foot in front of me where everything is clear. Closer than that, or further away, it's all divided again. I'm not sure what's going on there; I don't feel like I've had much improvement in a few days. I'm definitely going to have to talk to Dr. R about it when I see her on Tuesday.

Mobility is improving though! I practiced walking on my own yesterday. I think I walk like a toddler. L says that I walk like I'm drunk. The right side of my body is all jerky and uncoordinated, but I can shuffle along as long as I go slowly and I have something to grab onto in case I lose my balance.

I really want to keep moving and doing as much as I can. I don't want to sit here in this chair and get worse or weaker because I'm not doing anything. My hands have been weak and uncoordinated (I think I said before that writing is a challenge?) so I've been trying to use them as much as possible. I got some really thick, chunky yarn and I'm using some large knitting needles, and I'm just trying to keep my hands active. With my sight being so awful, it's been interesting, but I'm not really looking for a finished product, I just want to keep trying to get stronger.

I'm worried about my job; I've been gone for two weeks now. My supervisor, of course, knows what's going on, and I've already filed for an emergency medical leave and job-protected status. I'm not worried about losing my job, but I'm stressed about what everyone's thinking about me missing so much work. People there sort of made me feel like shit when I took so much time off when my mom was dying, and I feel like I'm going to be walking back into that when I get back...assuming that I GET back and that this is something I can heal from.

That's...really about it. Next on the doctor agenda is a meeting with my neurologist on Tuesday. Hopefully she'll have some answers for me, or at least let me know how I'm progressing in relation to other patients that she's seen with similar issues.

Can I call in sick to a doctor's appointment?

Today's been a bad day.

I woke up horribly dizzy and disoriented with a throbbing pain in my head.I've been trying not to take the pain pills they gave me because they make me even more dizzy, but damn, I didn't have a choice. I made a toaster waffle (being able to pull a hot waffle out of the toaster and not feel the heat at all IS a cool feature) and took the pills.

And then my dad shows up.

I'm grateful he's checking on me, and know that he's really concerned. However, it makes me feel even worse to have him so worried about me, and to see the disappointment on his face when he realizes that I'm not getting any better. I'm TRYING. I'm doing everything I can but it's my fucking brain that's not healing. I can't DO anything but wait, and his constant hounding me for more answers ("What did the doctor say? What's the worst case scenario here? Did she talk about laser surgery? Your mom had laser surgery you know.) is making me stressed out and cranky.

After he left, I was feeling the effects of the pain pills, so I went to bed and fell asleep. An hour later he calls me and wakes me up to ask why the spinal tap results are taking so long to come back. Because a distant relative I don't even know is asking him and is "concerned".

This isn't Grey's Anatomy. Diseases aren't diagnosed and healed within 48 minutes, and my neurologist sure doesn't look like McDreamy. Tests take time to come back, that's the way it works. And even when the results come back, it may not be a diagnosis. If it's not MS, it's something else, but the only way to rule that out is through additional tests.

My vision is improving slightly. If I tip my head and concentrate really hard, I can get my vision to come together for a few seconds. It's progress, and it's more than I could do a week ago, so I'm thinking it counts as improvement. Or I'm just becoming used to my new condition. I've mainly just been closing one eye and looking through the other.

My right hand really concerns me. I can't control it like I used to. Big movements aren't a problem, but anything that requires precision, I can't do. When I right, you might has well put a crayon in my hand and call me a three year old. Typing is hard; I can't bend my fingers quickly, so I'm sort of straight-finger-punching the keys. I'm a writer and this REALLY concerns me. I may have to relearn how to write... I'm 32.

I have a GP doctor's appointment tomorrow, and I really don't want to go. It's my first time with this doctor, and she's not seeing me for any of the neurological things, so I'm going to hobble into her office with one eye shut, using a walker, half dizzy and disoriented, and.... and what? I don't want to go, but it's too late to reschedule now, so I guess I'm stuck.

Ugh.